FIBROMYALGIA HEADACHES

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Hello I have posted on this forum before. I have wide spread arthritis including neck and upper spine. About 5 weeks ago I saw a rheumatologist on advice of my GP. Outcome was Mild Fibromyalgia (12 our of 18 trigger points) against a background of Osteoarthritis.I was also found to be slightly low on B12 and am now on a course of B12 tablets. I also have glaucoma, rhinitis,asthma underactive thyroid and IBS gasritis and Diverticulosis. I have suffered from anxiety but have that more or less under control now likewise the IBS as I am on a low fodmap diet. The pain in my neck and this shoulders has got worse in the last 2/3 months. I know that fibro can also cause headaches like wise the rhinitis especially now in hayfever season when I usually get more in the way of symptoms. I am now getting headaches a lot (although I have always been headache sufferer tension and migraine) since my 20s and I am now 71. I am not sure what is causing them neck, fibro, hayfever or combination of all . My question is those who have headaches as part of their fibromyalgia can you describe what they are like. I am having tension type headaches could be on the right or left or all over head together with neck and shoulder pain. The hot weather and thunder storms we have been having don't help. I also get a muscle type and sometimes burning pain at the top of one arm although this might be due to holding a phone or kindle for too long (technology has a lot to answer at times). I get a shooting pain over from back to crown of head if I bend over suddenly but it only lasts around a minute. I am planning to go back to gp and ask for fresh xrays or mri on neck and shoulders. So hard to get an appointment unless you call dead on 8am and wait in the queue. Don't often feel like doing this most mornings due to pain. You can usually book on line but one gp is away so no appointments on line at the moment. Can anyone relate to this and offer any solutions. Might have to call in the 8am queue call but always feel bad thinking if you want an appointment that day you must be ill.

1 like, 10 replies

10 Replies

  • Posted

    Hi I suffer from tension headaches i have a really bad one at the moment my head feels really tight and sore I've had it for 2 weeks now it's making me feel ill the doctor has put me on nortriptyline but im on day 14 and it doesn't seem to be helping I'm fed up it's horrible.

    • Posted

      Hello ginette1977 Yes I agree they are horrible and very draining.I am careful what I take in the way of pain killers just paracetamol. Can't take nsaids either. I don't know nortriptyline is that similar to amitripyline I have heard it causes lots of side effects and I have to be careful as some of these drugs raise eye pressures and as I have glaucoma that is something I don't want. I hope you find something to help you. Many years ago in the 1970s I was about 30 and i remember it was end of July and hot. I had this awful headache which lasted a week finally I went to the gp and he gave me something a tablet which I dissolved in water. Can't remember what is was but is worked like a dream.

    • Posted

      I TOOK Nortriptyline not so long ago ,but i was allergic after 3 days,i got a swollen lips,they were also numb,tongue was swelling up so i had stop stop takening it straight way,i had some loritaline in so i took 2 x 5 ml,i was also on amitripyline,but on the liquid and i was fine,but one of the gps took me off the liquid,and put me on the talets,they were the same strength has the liquid,but just after takeing just 2 tablets the lips and togue were swelling up and going numb,had nothing in,so i asked my friend to get me 6 x 250ml of water to flush the tablets sl my pain killers are co-c0damol 30/500, brutec pain patches,and voltarol gel

      because i have clonus and fibromyalgia the onlt headches i get is from my neck when the muscles go tight across my foreward,and the muscles in the neck,sometime i wear a soft collar and my tens machine plus i also have the fibromyalgia in my neck which works.judith from southport

  • Posted

    my name is judith i have arthrtis in my neck hands fingers right hip and left ankle,

    then i went for some xrays and an MRI scan and it showed i had arthrtis and fibromyalgia in my neck down to C6 AND arthris in my lower back,but again

    i have spams in my lower back the inner muscles are not working,so the outer

    muscles are having to do ther own work and the inner muscles as well i go for

    physio on my neck and my fibromyalgia they anted to operate on the neck and lower back,but they are both to near the nerviuos symptoms so i could be

    parallised from the neck downwards or from the waist downwardsthe neck goes very tight across the froehead and down the back of the neck,so i also use a tens machine,and some times a soft collar it moves the way your head goes,i know people who are short in vitamin B12 I AM SHORT IN VITAMIN D everytime

    i go for i blood test it shows i am lacking in vitamin d,it was down to 35,it should

    jube 75,so i go for a blood test in about 6 weeks,i have got fibromyalgia all over

    my body,i did have 20 symptoms,but it is now 22 numbness in my feet,and burning in my shoulders,are yyou on any meds at all? i am on co-c0damol 30 /500 brutecpatch patches,voltarol gel plus 7 other meds and fluoxatine for mental

    issues my gps have been brilliant with me, xrays.mri scans 4 blood tests,and a

    muscle and conduction testsover both ankles calfs,quads, both hands and arms,and neck,that also showwed up clonus and fibrmyalgia keep in touch with

    the group. judith from southport

    • Posted

      Thank you Judith86633 for your reply. You too have a lot to deal with. I also was found to be low on vitamin D3 I have osteopenia so I have to take VitD3 and calcium tablets. I don't take anything other pain killers except paracetamol. When I saw the rheumatologist she did suggest some drugs I could try I have them written down but as mentioned in my reply to another post a lot of them have loads of side effects and as I have other health problems I don't want them made worse. The most worrying is that some of the drugs recommended might cause eye pressures to rise and as I already have glaucoma I don't want to risk them unless really necessary. I can't take steroids either these are a no with glaucoma unless no other alternative. I found out a few years a go when having cataract surgery that I am what they call a steroid responder. After surgery you are routinely given steroid eye drops and although I was not on glaucoma drops at the time I had to have them whilst on the steroids to bring down the pressure which went very high.My gp has been called away and they don't know if and when she will be back. It is hard to get appointments and even then it is just a locum I like to see someone who knows my medical history. Anyway I really think I need fresh xrays or mri so will try and get an appointment in the next week or so. Our daughter and grandchildren are coming for lunch tomorrow so that will cheer me up.I see you are from Southport so not far from me (Greater Manchester) we moved up here 3 years ago from Greater London to be near daughter and family.

  • Posted

    You have an awfu lot going on and it definitely is part of Fibro to have many other symptoms, especially the ones you've mentioned. Headaches are always so difficult to pinpoint the cause! I suffered from terrible tension type headaches years ago and painkillers didn't do any good. I eventually went to see an acupuncturist and he described to me what was going on. So, holding out your hand with your fingers wide apart, that's like your vertebra, then weave imaginary threads through your fingers, these are your nerves, and these go through your vertebra over your brain and attached to the front of your head, at your forehead. Now start to move your fingers closer together, these are your vertebra moving closer, tightening on the nerves and pulling them tighter at your forehead, so he explained that this is generally what causes tension headaches and usually comes from your neck and tight shoulders. So you see, if you have problems with your neck and down your back, this could very well be the cause of your headaches and as your neck, shoulders and back get worse, so do the headaches! This is a simplistic view of it but I wonder is that the cause? I wonder if you had some acupuncture or gentle physio on your neck and shoulders, would it help, it might be worth investigating and hopefully will ease all the tension. Please let us know how things are progressing for you. xx

    • Posted

      Thank you Mrs _ Hobbles for your reply. It is so confusing trying to sort out what pain is caused by what and today ibs is playing up so tummy not 100%. I did self refer myself to a physio last year on NHS when the neck problem became worse. I only was offered 1 session and given some exercises to do which you can find on line anyway. They did help at first and even though I still do them it has got worse. My husband was referred by gp and he got 6 sessions for his neck as well. Why this should be I told know. I assume acupuncture would have to be private. It does get you down and it is making life hard both in terms of housework and going out. Will let you know how it goes hope to get a doctors appointment even if only a locum as my gp is away and don't know if and when she is returning, soon I hope. Take Care.

    • Posted

      i have 3 things wrong with my neck first is arthrtis,also in the neck i have clonus,which is like me and fibromyalgia, the clonus effects my head and neck and both arms hands and fingers,and both my legs,they all go into spasms i do had physio twice a week tuesdays i use a leg machine which does my upper and lower legs,because they go weak,this week he will treat my neck and shoulders,they are beginning to burn,he will also do my quads,and either calfs or ham strings i am having afull count blood test on the 23rd of august the last 3 times i have been lacking in vitamin D my body,just not retain my vitaminD ,some don,t hold vitamin B 12

      Judith

  • Posted

    Very sorry to hear of your health issues many are similar to mine. The hot weather can dehydrate us faster which causes my headaches. By staying hydrated and drinking plenty of water has helped to eliminate my headaches. Maybe can help you too. good luck.

  • Posted

    my headches are coming from my neck and head,because i have 3 problems i have

    arthrtis,clonus,and fibromyalgia ,I do drink alot,and i also drink tonic water fro the cramps i get which helps,and i have physio twice a week tuesday and thursday,my body is covered all over what other symptoms have you got? i have bought a fibromyalgia badge and t shirt from amazon which i will put on siteimageimageimageimage from judith in southport

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